I first photographed Amelia when she was 6 months old and you wouldn’t think anything differently of this lil babycakes expect for how great of a baby she was, I mean omg, she never cried or fussed throughout our session, she was the most easy going baby I think I’ve ever met, and her mom Stacy told me about a condition she had that I actually never heard of. Here’s her story to bring awareness to her condition and show you just how amazing this little girl is! At the end of the story enjoy the images from our last session.
Amelia was born on October 23rd, 2015 at 2:54 am weighing a healthy 7lbs 4oz. Shortly after being born Amelia passed the meconium stool within the 24 hours shortly after being born which all healthy babies pass. Within hours Amelia started vomiting bright green which we weren’t sure why. She was then was sent to the NICU to be closely monitored.
back on October 30th Amelia was diagnosed with Hirschsprung’s disease. After finding out that Amelia had this condition she then was required her to have surgery which occurred on November 2nd which she was placed under anesthesia and during the surgery they took biopsies of her colon to figure out where she was missing ganglion cells which help move things through. Half way through the surgery Dr. Novtony came out and explained to us that they were pretty far up in colon and the biopsies showed no nerves (ganglion cells).
They disconnected her colon from her small intestines and pulled her small intestines through her stomach creating a stoma which is called an ileostomy on the right side of her abdomen which she would stool out of. That day was not what we expected and to be 100% sure her colon didn’t have nerves (ganglion cells) they sent the biopsies to Cincinnati to have their pathologist review. On November 10th the results from Cincinnati came back and confirmed that Amelia has Total Colonic Hirschsprung’s (TCH) which meant her whole entire colon didn’t have ganglion cells throughout her colon. Amelia would have her colon removed within a year and have the small intestines pulled down to her rectum which is called the “pull -through procedure” meanwhile she has an ileostomy which requires her to have a bag like a colostomy bag.
We have a homecare RN two times a week. We’ve had a lot of follow up appointments with her condition but overall she’s healthy and happy . But in more recent news Amelia had her last surgery on June 3 and is doing great!!!!!